As a result I got invited to give my first keynote speech ever, for the Medicine 2.0 Congress in Toronto that fall. (To my knowledge it was the first time a patient was invited to give the opening keynote at an academic medical conference; if not, let me know in the comments below.)

Event organizer Gunther Eysenbach MD, whom I often quote now in my speeches, asked what I wanted for a speech title.

My life was spinning out of control and I really couldn’t think, so I said, frustrated: “I don’t know! … for now, just call it ‘Gimme My Damn Data, Because You Guys Can’t Be Trusted.”

We never got around to changing it: that’s how the speech went down. You can see the videos of it (four 10-minute YouTubes) on my videos page.

Today, somehow, it’s become a theme, a meme: Google it and you get 5,000 hits; it’s the motto of the patient data rights movement. Government officials have quoted it in policy meetings, and now it’s a coffee mug.

About the video:

Friend Ross Martin has the weirdest hobby I’ve ever heard of, at least among my friends: he writes & records songs about health IT. See his site. And he’s got a garage band, with two co-workers, Harry Greenspun and Chris Brancato, and Harry’s 16 year old son Ben.

Last spring they recorded this in someone’s basement, and at the big TEDMED conference in DC this April, he talked me and several others into doing vignettes about it. Like all good artists he then procrastinated for MONTHS before editing it all together and birthing the thing … the impetus, as so often happens, was a big conference, the Veterans Administration “Virtual Veterans eHealth University” last week in Orlando. He finished it just in time to be broadcast at the end of my talk.

The D-word: As Ross worked on it, he was concerned – as other have been – about sensitivity to the “damnation” issue: some good people are more polite than I, and don’t take damnation lightly. Ross deftly morphed it to “DaM”: Data (a)bout Me. I love it. So the mug’s out of date.

The next speech:

A ton has changed since that 2009 speech. Patient engagement in medical records is now Federal policy; awareness of data errors is widespread, as is the importance of fixing them; there’s a “What’s in Your Record?” video challenge, with $7700 in prizes, to promote the issue.

But boy do we have a long way to go: legally, your doctors’ records about your health are not your property. And that’s not just an American thing – my Danish friends point out that they’re allowed to see their records, but they’re not allowed to insist that errors get corrected!

Yet at some hospitals – for instance, those that participate in Planetree – the family not only does that, they can enter information in the record.

So this year when Eysenbach issued his call for papers, I submitted this proposal:

Gimme My Damn Data, Three Years On:
What’s Changed, What Hasn’t, and What Still Needs To.

It was accepted, and on Sunday 9/16 it’ll be the closing keynote of this year’s Medicine 2.0 in Boston.

What is in your record? Do you know? Do you have your DaM data?

At the VA’s event, they had nifty online audience polling. One question I asked was, have you looked in your record? Do you know if it has mistakes? (How about your kids’ record? Your parents’?)

Someday that will be important, because someday a doc or nurse will look there, and if the information’s wrong, harm could result. That’s why this issue’s so important – and that’s why it’s just not right that some docs and hospitals will not give you your data, unless you practically wrestle with them.

It’s common to hear of hospitals that say, illegally, “It’s not our policy to do that.” Or to charge (legally) ridiculous amounts of money.

“The times they are a-changin’,” as Bob Dylan sang in the Sixties. Get involved, clean it up, before crunchtime comes.

Comments

On a serious “note” (no puns intended, musical or medical) this is what happens when third parties become so powerful. In traditional Hippocratic medicine, it’s the patient and doctor who make up the dyad. Now we have a triad i.e. the third party, whether it is government or private insurance. The third party pays so it has taken on the key role, monitoring for so-called quality, deciding on what is worth paying for etc. If doctors and patients would return to the traditional model, the third party would take a back seat (e.g. catastrophic insurance) and would not have access to our data in the first place. It would also lower the cost of medical care.

At M. D. Anderson medical facility Houston TX, I can access all written records via my laptop. And print out anything I want. I can get a cd from the facility of any CT scan, MRI, etc., as soon as the procedure is completed. No charge. My wife’s doctors are not as forthcoming with data.

I’ve always heard that M. D. Anderson is superb at empowering patients and families through full access to their medical records, including OpenNotes before it was even called that.:-) Thanks for this addition!

EHR are only as good as the physician who is recording them, I’ve picked up any # of errors that could have been catastrophic in one way or another, I think every patient should want to know what is in
that record, unless they don’t value their life